14 ms·

A protein that disrupts cells’ energy centers may be a culprit in CFS/ME

241 points by kens 3y ago

hliyan 3y ago
> the onset of ME/CFS is often associated with viral infections by patients I can personally attest to this. I was an extremely energetic person (shooting straight out of bed in the morning, never requiring daytime naps or rests) until one specific week in April of 1996 when I had what I thought was a mild flu. The post-flu fatigue never really went away. I became acclamatised to it over the years and rarely notice it now (except times like this when I'm reminded that I'm significantly less energetic than the average person). I hope they find a treatment (if not a cure) for this soon. As I understand, some suffers are not as lucky as I am.
- traveler01 3y ago
  Honestly I feel like I can relate to what you're saying. Hoping as well they find more information regarding this problem soon.
- BobbyTables2 3y ago
  Have you ever had an EKG done (for the heart)? I recently had a minor cold that caused some sort of heart inflammation and could have exacerbated/triggered a latent heart rhythm issue. About 1-3 times a minute while resting, my pulse wouldn’t follow the normal rhythm (PVCs — could feel it too while pressing finger into the neck, without EKG). It made me feel less energetic long after the inflammation subsided. I couldn’t identity anything specifically “wrong”. After having a cardiac ablation, I feel a lot better. If you do, find a electrophysiologist, not a regular cardiologist. Asking the latter is like asking a plumber to find an electrical issue in your house.
  - Invictus0 3y ago
    I don't think you mean to be disrespectful but your comment is almost the equivalent of "did you try taking iron supplements".
    - jkingsman 3y ago
      I get where you're coming from (and it's great to be on guard for that!), but I think suggesting a specific diagnostic that can indicate a clear pathophysiology known to be associated with the symptoms they're experiencing is a little bit different.
    - anonuser123456 3y ago
      Inflammatory responses are well know triggers of ectopic beats… at least according to my cardiologist and IM provider.
  - anonuser123456 3y ago
    I think most general cardiologists know when to send you to an EP. Mine has an EP in his his group and just sends you down the hall.
  - hliyan 3y ago
    Have done many over the past 25 years (we call them ECGs over here). All were normal. One suggested that I may have MVP (Mitral Valve Prolapse) at the age of 18, which I thought was the cause. But then more resent scans confirm that I don't suffer from MVP.
- 01100011 3y ago
  Interesting. I got a very weird illness last November and all I can say is that it wasn't COVID. Ever since, my energy levels have plummeted, I can't stop gaining weight, I've had worsening cognitive issues, and I've become intolerant to exercise(yes, the weight makes this worse).
  - mwerty 3y ago
    Went through the same decades ago. Was prescribed Vitamin D 50,000 IU, once a week. Helped a lot. Best of luck!
    - 01100011 3y ago
      Yeah I should try pumping up my D levels. I take 2,000 IU/day plus mid-day sun exposure but it doesn't hurt to try it. From what I've read, short term Vit D doses can be pretty high without causing an issue.
    - Aurornis 3y ago
      50K IU of Vitamin D per week would push many people into overdose range after a few months. Anyone taking high doses like this needs to also get blood tests to make sure they're not accumulating too much. Remember that it stays in the body a long time and therefore overdose can take many months or over a year to finally show up. Vitamin D only really has dramatic effects in people who are severely deficient. Despite all of the influencers and podcasts claiming it's a miracle supplement and that we're all deficient, actual Vitamin D studies don't show much or any benefit outside of people who are significantly deficient. But yes, if your Vitamin D is actually low then getting it into the normal range could have some dramatic effects. Some doctors will prescribe short courses of Vitamin D as an almost-placebo when they can't find anything else wrong. It works quite well as a placebo for many people because podcast health influencers have been talking about it so much lately.
      - Terr_ 3y ago
        Tacking on for anyone alarmed or curious: The main distinction is fat-soluble versus water-soluble. Fat-soluble vitamins (A/D/E/K) can accumulate in your tissues over time if you keep taking too much. Water-soluble vitamins (such as C) are much easier for your body to filter and flush via urine. You could still overdose in the short-term, but a chronic accumulation is unlikely.
- johnchristopher 3y ago
  Apparently I had mononucleosis and my friends still tell me nowadays that I was sleeping all the time everywhere back then. I clearly remember something switching in my energy patterns around 17yo but it's hard to distinguish it from other possibilities like atypical depression or sleep apnea for instance or combinations.
- Wistar 3y ago
  "Seabiscuit" author Laura Hillenbrand wrote a disturbing (to me) essay entitled "A Sudden Illness" recounting the exact moment of the onset of her struggle with CFS. The apparent precursor infection was strep. https://www.newyorker.com/magazine/2003/07/07/a-sudden-illness https://www.newyorker.com/magazine/2003/07/07/a-sudden-illne... Also, Dianna Cowern, "Physics Girl" has been dealing with long COVID and CFS/ME for about a year now. Horrible. https://twitter.com/thephysicsgirl?lang=en https://twitter.com/thephysicsgirl?lang=en
  - atombender 3y ago
    Strep, in particular Streptococcus pyogenes, is really fascinating, and is potentially implicated in a lot of things. It's capable of what's called molecular mimicry, where a virulence factor called M protein cross-reacts with host antigens, causing autoantibodies to attack your own tissue, i.e. autoimmunity [1]. S. pyogenes has been implicated in other autoimmune disorders like psoriasis [2], which we know can be triggered by strep bacteria. In psoriasis, we have some evidence that it may set off a kind of bogus vicious cycle where a type of T-cell called a tissue-resident memory T-cell is "programmed" by an initial bacterial infection, but gets into a confused state where inflammation keeps going even long after the bacteria are physically gone. With other disorders, PANDAS [3], the cross-reactivity causes strep affect the brain and cause neuropsychiatric symptoms. In some cases, strep bacteria are thought to linger in the body even long after a symptomatic infection, hiding in biofilm or in reservoirs like the tonsils, occasionally re-emerging to cause an immune response, similar to the Epstein-Barr virus. I would not be surprised if strep turns out to be the ultimate cause of some illnesses like ME. [1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6684244/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6684244/ [2] https://pubmed.ncbi.nlm.nih.gov/19781993/ https://pubmed.ncbi.nlm.nih.gov/19781993/ [3] https://www.nimh.nih.gov/health/publications/pandas https://www.nimh.nih.gov/health/publications/pandas
    - Wistar 3y ago
      Interesting! Earlier this year my spouse fell mildly ill and was diagnosed with strep (throat). She was given a high-strength anti-biotic that had two or, maybe three initial large doses followed by about 20 smaller doses. She felt better for a couple weeks but soon fell ill again. She was diagnosed a second time with strep. She was prescribed a wider spectrum antibiotic with a longer course of 28 days which seemed to do the trick.
- lujim 3y ago
  ahh. I know the exact month and year as well. March 2004.
- tootie 3y ago
  Viral infections can also induce narcolepsy. I'm not sure if that's what did it to me, but I developed symptoms in my 40s and it was a few years after a bout of what I think was meningitis.
- watersb 3y ago
  I managed to get through a bad flu infection in late 2003, but my health steadily declined over the next 5 years to the point where I could not get out of bed two or three days per week. Like, crawling on the floor to get out of bed exhaustion. I've been tested and evaluated for lots of things. Fortunately, not a dire progressive disease like multiple sclerosis or Parkinson's. Unfortunately, I have not been able to substantially improve energy level in a sustained way. There are times when I can gain momentum for about three weeks but then there's a collapse. If I push it, I've had vital signs go awry and it's enough to scare the emergency medical personnel who are called when I pass out... and then a few hours later, nothing worse than severe fatigue. I wonder how far away we might be to sorting it all out, things you shouldn't be doing after a viral infection, or environmental factors that we will discover, or if we will be able to understand this at all without a more fundamental rework of medical understanding.
PaulKeeble 3y ago
This is a finding more about cellular fatigue and might explain what fatigue actually is. The root cause of ME/CFS and Long Covid Fatigue is almost certainly a chronic infection in tissue without much detectable presence in fluids making it difficult to identify and treat. It is an interesting finding since some treatments for ER stress exist and are worth testing. It's also somewhat linked to the Itaconate shunt theory that Robert Phair at Stanford has been investigating for the past year.
- tomrod 3y ago
  It's probably not COVID hiding in the tissues? I wonder whether injection of genes by the virii result in altered DNA producing broken proteins. Is 23andMe data of sufficient quality to test altered DNA?
  - pja 3y ago
    23andme looks for specific single nucleotide polymorphisms (SNPs) so it’s completely unsuitable for looking for this kind of DNA alteration that could be anywhere in the genome.
    - tomrod 3y ago
      Thank you for the correction. How would you look for DNA alteration, generally?
      - mnw21cam 3y ago
        Whole genome sequencing of some kind, preferably one of the newfangled long-read technologies such as Oxford Nanopore or Pacbio, would be best for looking for novel insertions into the genome. However, this is likely to be a fool's errand in this case, because this kind of sequencing normally assumes that we can take a sample of many cells from the body, and that all those cells have the exact same DNA changes. If you have a mutation that is induced in a parent or the single-figure-cell stage of embryo development then that will be true, but for DNA modification by a virus in an adult it will not be. Each cell will have a different insertion. Now, there are some techniques that can sequence the DNA from a single cell, but they don't give quite as good quality data, and because you'd be wanting to sample a good number of cells to see what the distribution of insertions is, it will likely also be very expensive.
merricksb 3y ago
Research paper on PNAS is paywalled. Article on science.org may be a better link: https://www.science.org/content/article/protein-disrupts-cells-energy-centers-may-be-culprit-chronic-fatigue-syndrome https://www.science.org/content/article/protein-disrupts-cel...
rapnie 3y ago
Last Thursday the Dutch News reported about findings at Amsterdam UMC of an enzyme IDO-2 that keeps being produced in long covid patients' cells. And that an experimental cancer medicine manufactured by Bayer and BMS can put a stop to this. It was brought as an 'important step' in long covid research (that nonetheless would take years to lead to any broadly available cure). Unfortunately the article didn't publish links to papers. [0] In Dutch: https://nos.nl/artikel/2486149-experimenteel-kankermedicijn-in-beeld-als-antwoord-op-longcovidklachten https://nos.nl/artikel/2486149-experimenteel-kankermedicijn-...
- maxboone 3y ago
  https://www.thelancet.com/journals/ebiom/article/PIIS2352-3964(23)00294-3/fulltext https://www.thelancet.com/journals/ebiom/article/PIIS2352-39...
- FollowingTheDao 3y ago
  IDO2 is stimulated during any infection but ongoing IDO2 expression could come from an iron deficiency. Iron is the cofactor for TPH1 and TPH2 which turns tryptophan into serotonin. If that is not working the tryptophan will be turned into kynurenine by IDO1 and IDO2. https://www.mdpi.com/ijms/ijms-22-11714/article_deploy/html/images/ijms-22-11714-g001.png https://www.mdpi.com/ijms/ijms-22-11714/article_deploy/html/... Iron deficiency has been a common feature of LC for a while: https://timesofindia.indiatimes.com/life-style/health-fitness/health-news/is-iron-deficiency-an-after-effect-of-covid-infection-experts-answer-shed-light-on-the-signs-sources-and-supplementation/articleshow/92818880.cms https://timesofindia.indiatimes.com/life-style/health-fitnes...
aszantu 3y ago
The WASF3 Protein shows up in other studies as well. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8703627/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8703627/ I'm esp. interested in any interaction with food. Because I get depression 4 days after I ate a food. I don't have any other symptoms than low energy and a sense of impending doom. Symptoms stay for 3 days then go away. Started collecting the info in my github. I'm very interested if anyone has more ideas.
- icoder 3y ago
  Did you purposely leave out what type of food or was that a typo? Because that would be an (the) interesting part of your experience!
  - aszantu 3y ago
    I'm on carnivore diet. I seem to tolerate almost only meat, plants only in small quantities. I did okay with 1 grapefruit/day for a while but that's come to an end. I seem to be okay with fermented thyme. Pepper is no good, swollen eyes, but chilly seems to be okay. Those are never consumed in big quantities, I could test with chilly capsules though and maybe I will. Diet consists of Lamb, once a day, then some yoghurt or kefir in the evening. Some koffee and milk as well. Haven't collected everything yet, maybe you find something that helps - or can add some. Trying to get diagnosis for leaky gut, it's a drag to get an appointment. https://github.com/cutestuff/FoodDepressionConundrum https://github.com/cutestuff/FoodDepressionConundrum
- coldtea 3y ago
  That could be some micro-allergy to that food (or one of its ingredients)?
- treprinum 3y ago
  Did you try antihistamines? This could be some form of acquired allergy or auto-immune reaction.
  - rocqua 3y ago
vlovich123 3y ago
How would one go about getting a test of the levels of this protein?
aestetix 3y ago
There needs to be more research into this horrible disease. There are no yet confirmed biomarkers for it, so doctors dismiss patients as crazy or "making it up." Once there is a biomarker, perhaps like this protein, we can actually start testing treatments to see what works. The scary thing is that there seems to be a vicious path, of COVID->long COVID->ME/CFS. We're not sure what makes COVID evolve into long COVID, which also means we have no idea how many people who catch COVID eventually wind up with long COVID or ME/CFS. And there is a total media blackout on the topic, seemingly because politicians don't want to admit they fucked up. Hopefully once there is a way to verifiably test for it, a lot of things will change for the better.
- manmal 3y ago
  Just an observational study (FWIW), but microbiome defects could play a role in development of long COVID: https://gut.bmj.com/content/71/3/544 https://gut.bmj.com/content/71/3/544
- Madmallard 3y ago
  they could do transport chain simulation with blood or muscle samples most likely but it would require expensive equipment so not really feasible if a million people have it perhaps organic acids testing could show something?
- maxehmookau 3y ago
  > doctors dismiss patients as crazy or "making it up." I don't think that's true, at least not in my experience anyway. People (myself included) are too quick to conflate "all in your head" with "making it up". Things "in your head" can and do have real, physical, life-limiting, effects. If it turns out that ME/CFS doesn't has a physical marker, then what? There may never be a way to verifiably test for it other than symptomatically. It's no less real for the people living with the effects, but there may be no pill to take, or injection to administer.
  - j_maffe 3y ago
    Yes but recent studies have shown that it's neither of those, meaning that the symptoms are physiological. Not that I'm dismissing the importance of proper care of people with my psychiatric issues with fatigue or pain, it just doesn't apply to ME/CFS/LC anymore.
quenched 3y ago
I understand there is an interesting back-story to this paper that will be published in the Washington Post next week. If the findings are replicated (they look promising) we will owe a debt to the patients involved, as well as the researchers, but in particular to the 38 yo index patient with Li Fraumeni syndrome.
hotdogscout 3y ago
I got long covid in Jan 2022 but after 9 months the neurological symptoms went away. I got sick just this week and the brain fog came back. Taking probiotics and supplements (omega 3, Multivitamins) and aspirin accelerates the process of getting better for me. I use n-back exercises from Brain Age Concentration Training as measure.
- philjohn 3y ago
  Interesting, as aspirin is an anti-inflammatory - there's also a super small scale trial that happened in Madrid where a short course of 30mg of predisone had positive impact on those suffering from long-covid.
- swores 3y ago
  Im confused as to how you reached the conclusion that probiotics and those supplements speeds up the recovery, if your data points are 1) that took 9 months to recover and 2) that only happened in the last week. Is it that this week's brain fog has already gone away and the only difference you can think of is taking those things? In which case it's really nowhere near enough data points to draw conclusions. Really, even for stuff like people saying "when I get a cold, I always recover faster if <x>" is almost certainly either a placebo effect, or a random opinion that may or may not align with actual medical reality. Because not only does something like "a cold" or "a flu" or "covid" cover many variants rather than being a single identical type of infection, but even if they somehow knew that every time they had been infected by an identical form of a virus there are still so many variables such as how much of the virus initially breached their body, how much sleep they'd had in the lead up to and post- infection, what they'd been eating around the time, etc etc Which is why we use studies looking at large numbers of people to figure out what does and doesn't help recovery rather than relying on anecdotes. And in your case it seems like even less data than someone making a judgement based on potentially dozens of colds over their lifetime, it's just one or two data points? (Although since probiotics and vitamin supplements won't, in typical doses, cause any harm except to your wallet, there's certainly no harm in taking them after a sickness - and even if there isn't a link between them having a physical impact in speeding up recovery, they could still or course work wonders as placebos too!)
niffydroid 3y ago
As a side note there is the following study CFS/me which might be of interest "We aim to find genetic causes of why people become ill with myalgic encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) with our ground-breaking research. Take part from your home" https://www.decodeme.org.uk/ https://www.decodeme.org.uk/
- GordonS 3y ago
  I participated in this, and would encourage others to do so. It's really easy: they send you a spit kit, you do it and post it back, simple as that.
- FollowingTheDao 3y ago
  Sorry, but they will not find it. At best ME/CFS has a polygenic cause but unless they are also testing for nutrient deficiencies this will come to nothing. The cure can only come from personalized medicine, looking at the individual, not looking for a common cause.
  - niffydroid 3y ago
    But surely this is a treasure trove of data? Sure the research is aiming to find some sort of common ground, but it still would be possible to use the raw data later on
musha68k 3y ago
Recent TWiV episode with tangents on COVID-19 / post-COVID-19 syndrome: https://www.microbe.tv/twiv/twiv-1034/ https://www.microbe.tv/twiv/twiv-1034/ https://www.science.org/doi/10.1126/scitranslmed.abq1533 https://www.science.org/doi/10.1126/scitranslmed.abq1533
deleted 3y ago
[deleted]
kitanata 3y ago
[flagged]
AnimalMuppet 3y ago
There is some research currently on low doses of naloxone as a treatment for long Covid/CFS/ME. Would naloxone have anything to do with this protein, or is it an unrelated approach?
- PaulKeeble 3y ago
  We think it just reduces some of the brain inflammation and thus alleviates some of the symptoms. Its also a treatment sufferers become tolerant to and it stops working. Its also very hard to dose right and requires constant adjustments and its not without side effects that often make it not worthwhile and for some people it never works. It should be authorised as a treatment for ME/CFS and Long Covid in the short term alongside Ablify as sufferers should get to try these and see if they work but they are both very far from a good treatment and do nothing for the core parts of the condition.
  - nradov 3y ago
    There's no process to "authorize" an existing approved prescription drug as a treatment for ME/CFS and Long COVID. Doctors can already prescribe those drugs off label if they wish (although the patient might have trouble getting insurance coverage for those claims depending on their policy). In order to make them on-label treatments then the drug company or some other party will have to conduct a large-scale clinical trial and go through the FDA regulatory process to prove that it is safe and effective. This is expensive, but drug companies do such studies all the time in order to increase revenue and extend patent protections.
    - GordonS 3y ago
      It depends on the country. In the UK for example, medications are indeed licensed to treat certain conditions. Specialist doctors are able to prescribe off-label regardless, but most are reticent to do so.
- InSteady 3y ago
  I could be wrong, but I believe naloxone isn't really orally bioavailable. Most of the very limited research focuses on low dose naltrexone (LDN) instead, naltrexone being another opioid receptor antagonist with paradoxical properties, namely analgesic and anti-inflammatory properties, at low dosages. There could be a link here, although it is tenuous and purely lay speculation. ER stress is discussed in the article: >Both S1 and the people with ME/CFS had biochemical signatures of ER stress in their muscles, and treating S1’s cells in a dish with a drug that blocks ER stress lowered WASF3 levels and restored mitochondrial function. On the flipside, using toxins to artificially induce ER stress in cultured cells or in mice caused a rise in WASF3 levels, Hwang says. LDN has been found to be quite effective in alleviating ER stress specifically in the epithelial barrier in IBD [0], rather than the ER stress - WASF3 levels being investigated in muscle cells in the above article. Certainly worth investigating. And, as noted in the article, the WASF3 angle is merely one potential pathway of the disorder. [0] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5845217/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5845217/ >Low dose Naltrexone induced clinical improvement in 74.5%, and remission in 25.5% of patients. Naltrexone improved wound healing and reduced ER stress induced by Tunicamycin, lipopolysaccharide or bacteria in epithelial barriers.
cpncrunch 3y ago
Small study, and its unclear if results are actually statistically sigificant https://www.s4me.info/threads/wasf3-disrupts-mitochondrial-respiration-and-may-mediate-exercise-intolerance-in-myalgic-encephalomyelitis-chronic-fatigue-syndrome-2023-hwang-et-al.34776/page-5#post-489320 https://www.s4me.info/threads/wasf3-disrupts-mitochondrial-r...
joshjhargreaves 3y ago
All I can say is that having significant gut dysbiosis is enough to have significant fatigue - think for sure, you can end up having fatigue from cell energy production issues, but it's clear to me that there are definitely different causes of CFS.
- vaelin 3y ago
  It's possibly the same thing. Endoplasmic Reticulum Stress, the type of stress which may cause this protein to become elevated, was induced in mice by exposing them to endotoxin, a type of toxin produced in the gut. So gut dysbiosis may trigger this very mechanism.
ugh123 3y ago
For those not aware of the extreme cases of long covid, see "Physics Girl" Dianna Cowern and her illness. https://www.youtube.com/watch?v=vydgkCCXbTA&ab_channel=PhysicsGirl https://www.youtube.com/watch?v=vydgkCCXbTA&ab_channel=Physi...
harha_ 3y ago
Last year I thought I had something like CFS but it turned out to be "just" a Vitamin D deficiency.
msie 3y ago
I hope development of a treatment doesn't take 10 years.
roody15 3y ago
Throughout my late teens and early 20’s I suffered from chronic fatigue. Tested positive for mononucleosis three times until later finding these were false positives to Epstein Barr. Later learning my body was having an autoimmune inflammatory response to viral activity causing debilitating fatigue. Took variety of treatments including steroids, anti depressants, supplements … and so on. When I was 22 I met person on the campus of mizzou who simply showed me some meditative stretches and breathing exercises. The idea was to just slow down and focus on improving your bodies own health where it’s at. This is a oversimplification but the key for me was to stop thinking this was a virus or disorder or in general things were happening to me .. in which I was a passive unfortunate recipient looking for professionals to help. Instead I decided from now on I would just try and be a healthier person in mind body and spirit where I was at that moment. The change of mindset to where it is my responsibility to improve my own well being has paid massive dividends. As a middle man I have no real health issues, no chronic fatigue or reoccuranr high white blood cell accounts indicating and over reactive immune system. My case will lot insipidity apply to all but if I could impart any wisdom would be just take things into your own hands and be an active person working on improving your own condition whatever it may be. Change the mindset of shoots this sucks and no treatments work … why is this happening to me… to what are things I can do to improve my existence. Am I a nice person. Am I healthy (weight / exercise).. do I like my job and find it is meaningful… Sorry if sounds dumb and corny but made a world of difference for me.
- deleted 3y ago
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- hinkley 3y ago
  Complications of Epstein Barr have not been ruled out as a cause for CFS. But the problem is that nearly everyone has been exposed so it's hard to find counterexamples (or the lack of counterexamples)
barryaustin 3y ago
For anyone generally curious about the ME/CFS patient experience and state of medicine, there are a couple good articles in The Atlantic[0][1]. For those interested in latest research, Dr. Bhupesh Prusty presented[2] a very plausible hypothesis with detailed evidence[3] of virus-triggered autoimmunity causing mitochondrial dysfunction in endothelial cells (vascular system). And there's a promising treatment for Long COVID with a study[4] claiming improvement in many symptoms, and describing the targeted mechanism of disease pathology (also vascular system). Needs trials and replication, or until then doctors willing to risk off-label treatment. [0] https://web.archive.org/web/20230728074923/https://www.theatlantic.com/health/archive/2022/09/mecfs-chronic-fatigue-syndrome-doctors-long-covid/671518/ https://web.archive.org/web/20230728074923/https://www.theat... [1] https://web.archive.org/web/20230731145624/https://www.theatlantic.com/health/archive/2023/07/chronic-fatigue-long-covid-symptoms/674834/ https://web.archive.org/web/20230731145624/https://www.theat... [2] https://www.youtube.com/watch?v=sBmtnMenHgw https://www.youtube.com/watch?v=sBmtnMenHgw [3] https://www.medrxiv.org/content/10.1101/2023.06.23.23291827v1.full-text https://www.medrxiv.org/content/10.1101/2023.06.23.23291827v... [4] https://www.researchsquare.com/article/rs-2697680/v1 https://www.researchsquare.com/article/rs-2697680/v1
- Aurornis 3y ago
  A warning about Long COVID research: Any long-term trials that don't have a control group are virtually useless. When large Long COVID patient groups are studied without any treatment, the number of people reporting Long COVID symptoms declines over the course of the study. The takeaway is that for many (but not all!) Long COVID symptoms naturally get better over time. This is a huge problem for Long COVID treatment studies that don't include a control group because there's no way to tell if the treatment made the patients better any faster than they would have normally healed.
  - barryaustin 3y ago
    Yes, that's why I said "needs trials and replication". That small clinical study is useless for insurance companies and standard medical practice today. But it is very useful to point the way toward promising areas of further research, and for any pioneering risk-takers who might be willing to try. That is, after all, how we learned that stomach ulcers are not psychosomatic (caused by "stress"), but rather by the bacterium H. Pylori. A doctor infected himself, got ulcers, and cured himself with antibiotics!
tysam_and 3y ago
I have a post-viral syndrome case of chronic fatigue. I've not been diagnosed with CFS formally, but I match many of the symptoms required, including orthostatic intolerance. It is an extremely complicated condition. I personally have had a pet theory that disturbed barrier function is involved somehow, and seeing this article is extremely confirming for me, since it mentions that as a potential factor. In fact, one study on just the metabolites of people with CFS vs healthy people found that a Vitamin E derivative -- one often a part of healthy cell barrier function -- was significantly lacking in CFS people compared to the normal population, and was a strong marker. However, this seems to have been largely brushed over in later literature, with more popular things like fatty acid processing and such being mentioned. What has worked for me: -- Ketogenic diet (avoiding lactic acid production) -- greatly dampened PEMS. -- Blood glutamate scavengers + Niacinamide + Ribose (1g): Provides NAD + a cofactor needed to transform glutamate in the blood into something else. For some reason, this really seems to help with CFS patients. Helps with resting fatigue. The cheap and accessible BGS I use are NAC, pyruvate, and (sometimes) malic/citric acid. Malic is better as it is right before oxaloacetate, a BGS, in the Krebs cycle, and it turns into Citrate. Citrate IIRC raises the levels of one of the enzymes that eliminates lactic acid. Your blood cells can only use glycogen, so there will always be some level of lactic acid production to be suppressed. -- Reduced glutamate + free glutamate intake: Lower-glutamate proteins (tuna, etc), no hydrolyzed soy protein, yeast extract, etc. -- Gotu Kola (biases the glutamate<->GABA conversion towards glutmate->GABA as I understand, a double-bonus), various anti-inflammatories (Quercetin+non-citrus C, liposomal Turmeric+curcuminoids (!! Important, piperine inhibits both Pgp and glucoronidation, which increases absolutely everything in absorption. Liposomal is better), and boswellia for LOX-5 inhibition. Looking to move to a stronger Boswellia extract (5-Loxin) as it's lighter weight. These changes, while I still have energy issues, have made it safe enough for me to be able to backpack outdoors for extended periods of time. My longest so far has been a 2 month trip (with 1-2 nights indoors). Hope this helps anyone who struggles with this and is looking to experiment. I wish I was back to 100%, but being able to be out in nature after being mostly bedbound is...well, my heart is much more full when I am. <3 :')
lilyball 3y ago
I would love to know if these results apply to fibromyalgia as well, as CFS/ME-like fatigue can be present with fibromyalgia. For example, in my case, the only reason I wasn't given a concurrent CFS/ME diagnosis with my fibro is because I couldn't point to a viral infection that triggered the fatigue.
alexfromapex 3y ago
My working theory is that viruses like COVID trigger autoimmune reactions because of ACE2 binding which causes immune cells to attack the thyroid and cause hypothyroidism leading to fatigue.

241 points by kens 3y ago

> the onset of ME/CFS is often associated with viral infections by patients I can personally attest to this. I was an extremely energetic person (shooting straight out of bed in the morning, never requiring daytime naps or rests) until one specific week in April of 1996 when I had what I thought was a mild flu. The post-flu fatigue never really went away. I became acclamatised to it over the years and rarely notice it now (except times like this when I'm reminded that I'm significantly less energetic than the average person). I hope they find a treatment (if not a cure) for this soon. As I understand, some suffers are not as lucky as I am.

traveler01 3y ago
Honestly I feel like I can relate to what you're saying. Hoping as well they find more information regarding this problem soon.
BobbyTables2 3y ago
Have you ever had an EKG done (for the heart)? I recently had a minor cold that caused some sort of heart inflammation and could have exacerbated/triggered a latent heart rhythm issue. About 1-3 times a minute while resting, my pulse wouldn’t follow the normal rhythm (PVCs — could feel it too while pressing finger into the neck, without EKG). It made me feel less energetic long after the inflammation subsided. I couldn’t identity anything specifically “wrong”. After having a cardiac ablation, I feel a lot better. If you do, find a electrophysiologist, not a regular cardiologist. Asking the latter is like asking a plumber to find an electrical issue in your house.
- Invictus0 3y ago
  I don't think you mean to be disrespectful but your comment is almost the equivalent of "did you try taking iron supplements".
  - jkingsman 3y ago
    I get where you're coming from (and it's great to be on guard for that!), but I think suggesting a specific diagnostic that can indicate a clear pathophysiology known to be associated with the symptoms they're experiencing is a little bit different.
  - anonuser123456 3y ago
    Inflammatory responses are well know triggers of ectopic beats… at least according to my cardiologist and IM provider.
- anonuser123456 3y ago
  I think most general cardiologists know when to send you to an EP. Mine has an EP in his his group and just sends you down the hall.
- hliyan 3y ago
  Have done many over the past 25 years (we call them ECGs over here). All were normal. One suggested that I may have MVP (Mitral Valve Prolapse) at the age of 18, which I thought was the cause. But then more resent scans confirm that I don't suffer from MVP.
01100011 3y ago
Interesting. I got a very weird illness last November and all I can say is that it wasn't COVID. Ever since, my energy levels have plummeted, I can't stop gaining weight, I've had worsening cognitive issues, and I've become intolerant to exercise(yes, the weight makes this worse).
- mwerty 3y ago
  Went through the same decades ago. Was prescribed Vitamin D 50,000 IU, once a week. Helped a lot. Best of luck!
  - 01100011 3y ago
    Yeah I should try pumping up my D levels. I take 2,000 IU/day plus mid-day sun exposure but it doesn't hurt to try it. From what I've read, short term Vit D doses can be pretty high without causing an issue.
  - Aurornis 3y ago
    50K IU of Vitamin D per week would push many people into overdose range after a few months. Anyone taking high doses like this needs to also get blood tests to make sure they're not accumulating too much. Remember that it stays in the body a long time and therefore overdose can take many months or over a year to finally show up. Vitamin D only really has dramatic effects in people who are severely deficient. Despite all of the influencers and podcasts claiming it's a miracle supplement and that we're all deficient, actual Vitamin D studies don't show much or any benefit outside of people who are significantly deficient. But yes, if your Vitamin D is actually low then getting it into the normal range could have some dramatic effects. Some doctors will prescribe short courses of Vitamin D as an almost-placebo when they can't find anything else wrong. It works quite well as a placebo for many people because podcast health influencers have been talking about it so much lately.
    - Terr_ 3y ago
      Tacking on for anyone alarmed or curious: The main distinction is fat-soluble versus water-soluble. Fat-soluble vitamins (A/D/E/K) can accumulate in your tissues over time if you keep taking too much. Water-soluble vitamins (such as C) are much easier for your body to filter and flush via urine. You could still overdose in the short-term, but a chronic accumulation is unlikely.
johnchristopher 3y ago
Apparently I had mononucleosis and my friends still tell me nowadays that I was sleeping all the time everywhere back then. I clearly remember something switching in my energy patterns around 17yo but it's hard to distinguish it from other possibilities like atypical depression or sleep apnea for instance or combinations.
Wistar 3y ago
"Seabiscuit" author Laura Hillenbrand wrote a disturbing (to me) essay entitled "A Sudden Illness" recounting the exact moment of the onset of her struggle with CFS. The apparent precursor infection was strep. https://www.newyorker.com/magazine/2003/07/07/a-sudden-illness https://www.newyorker.com/magazine/2003/07/07/a-sudden-illne... Also, Dianna Cowern, "Physics Girl" has been dealing with long COVID and CFS/ME for about a year now. Horrible. https://twitter.com/thephysicsgirl?lang=en https://twitter.com/thephysicsgirl?lang=en
- atombender 3y ago
  Strep, in particular Streptococcus pyogenes, is really fascinating, and is potentially implicated in a lot of things. It's capable of what's called molecular mimicry, where a virulence factor called M protein cross-reacts with host antigens, causing autoantibodies to attack your own tissue, i.e. autoimmunity [1]. S. pyogenes has been implicated in other autoimmune disorders like psoriasis [2], which we know can be triggered by strep bacteria. In psoriasis, we have some evidence that it may set off a kind of bogus vicious cycle where a type of T-cell called a tissue-resident memory T-cell is "programmed" by an initial bacterial infection, but gets into a confused state where inflammation keeps going even long after the bacteria are physically gone. With other disorders, PANDAS [3], the cross-reactivity causes strep affect the brain and cause neuropsychiatric symptoms. In some cases, strep bacteria are thought to linger in the body even long after a symptomatic infection, hiding in biofilm or in reservoirs like the tonsils, occasionally re-emerging to cause an immune response, similar to the Epstein-Barr virus. I would not be surprised if strep turns out to be the ultimate cause of some illnesses like ME. [1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6684244/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6684244/ [2] https://pubmed.ncbi.nlm.nih.gov/19781993/ https://pubmed.ncbi.nlm.nih.gov/19781993/ [3] https://www.nimh.nih.gov/health/publications/pandas https://www.nimh.nih.gov/health/publications/pandas
  - Wistar 3y ago
    Interesting! Earlier this year my spouse fell mildly ill and was diagnosed with strep (throat). She was given a high-strength anti-biotic that had two or, maybe three initial large doses followed by about 20 smaller doses. She felt better for a couple weeks but soon fell ill again. She was diagnosed a second time with strep. She was prescribed a wider spectrum antibiotic with a longer course of 28 days which seemed to do the trick.
lujim 3y ago
ahh. I know the exact month and year as well. March 2004.
tootie 3y ago
Viral infections can also induce narcolepsy. I'm not sure if that's what did it to me, but I developed symptoms in my 40s and it was a few years after a bout of what I think was meningitis.
watersb 3y ago
I managed to get through a bad flu infection in late 2003, but my health steadily declined over the next 5 years to the point where I could not get out of bed two or three days per week. Like, crawling on the floor to get out of bed exhaustion. I've been tested and evaluated for lots of things. Fortunately, not a dire progressive disease like multiple sclerosis or Parkinson's. Unfortunately, I have not been able to substantially improve energy level in a sustained way. There are times when I can gain momentum for about three weeks but then there's a collapse. If I push it, I've had vital signs go awry and it's enough to scare the emergency medical personnel who are called when I pass out... and then a few hours later, nothing worse than severe fatigue. I wonder how far away we might be to sorting it all out, things you shouldn't be doing after a viral infection, or environmental factors that we will discover, or if we will be able to understand this at all without a more fundamental rework of medical understanding.

PaulKeeble 3y ago

This is a finding more about cellular fatigue and might explain what fatigue actually is. The root cause of ME/CFS and Long Covid Fatigue is almost certainly a chronic infection in tissue without much detectable presence in fluids making it difficult to identify and treat. It is an interesting finding since some treatments for ER stress exist and are worth testing. It's also somewhat linked to the Itaconate shunt theory that Robert Phair at Stanford has been investigating for the past year.

tomrod 3y ago
It's probably not COVID hiding in the tissues? I wonder whether injection of genes by the virii result in altered DNA producing broken proteins. Is 23andMe data of sufficient quality to test altered DNA?
- pja 3y ago
  23andme looks for specific single nucleotide polymorphisms (SNPs) so it’s completely unsuitable for looking for this kind of DNA alteration that could be anywhere in the genome.
  - tomrod 3y ago
    Thank you for the correction. How would you look for DNA alteration, generally?
    - mnw21cam 3y ago
      Whole genome sequencing of some kind, preferably one of the newfangled long-read technologies such as Oxford Nanopore or Pacbio, would be best for looking for novel insertions into the genome. However, this is likely to be a fool's errand in this case, because this kind of sequencing normally assumes that we can take a sample of many cells from the body, and that all those cells have the exact same DNA changes. If you have a mutation that is induced in a parent or the single-figure-cell stage of embryo development then that will be true, but for DNA modification by a virus in an adult it will not be. Each cell will have a different insertion. Now, there are some techniques that can sequence the DNA from a single cell, but they don't give quite as good quality data, and because you'd be wanting to sample a good number of cells to see what the distribution of insertions is, it will likely also be very expensive.

merricksb 3y ago

Research paper on PNAS is paywalled. Article on science.org may be a better link: https://www.science.org/content/article/protein-disrupts-cells-energy-centers-may-be-culprit-chronic-fatigue-syndrome https://www.science.org/content/article/protein-disrupts-cel...

rapnie 3y ago

Last Thursday the Dutch News reported about findings at Amsterdam UMC of an enzyme IDO-2 that keeps being produced in long covid patients' cells. And that an experimental cancer medicine manufactured by Bayer and BMS can put a stop to this. It was brought as an 'important step' in long covid research (that nonetheless would take years to lead to any broadly available cure). Unfortunately the article didn't publish links to papers. [0] In Dutch: https://nos.nl/artikel/2486149-experimenteel-kankermedicijn-in-beeld-als-antwoord-op-longcovidklachten https://nos.nl/artikel/2486149-experimenteel-kankermedicijn-...

maxboone 3y ago
https://www.thelancet.com/journals/ebiom/article/PIIS2352-3964(23)00294-3/fulltext https://www.thelancet.com/journals/ebiom/article/PIIS2352-39...
FollowingTheDao 3y ago
IDO2 is stimulated during any infection but ongoing IDO2 expression could come from an iron deficiency. Iron is the cofactor for TPH1 and TPH2 which turns tryptophan into serotonin. If that is not working the tryptophan will be turned into kynurenine by IDO1 and IDO2. https://www.mdpi.com/ijms/ijms-22-11714/article_deploy/html/images/ijms-22-11714-g001.png https://www.mdpi.com/ijms/ijms-22-11714/article_deploy/html/... Iron deficiency has been a common feature of LC for a while: https://timesofindia.indiatimes.com/life-style/health-fitness/health-news/is-iron-deficiency-an-after-effect-of-covid-infection-experts-answer-shed-light-on-the-signs-sources-and-supplementation/articleshow/92818880.cms https://timesofindia.indiatimes.com/life-style/health-fitnes...

aszantu 3y ago

The WASF3 Protein shows up in other studies as well. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8703627/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8703627/ I'm esp. interested in any interaction with food. Because I get depression 4 days after I ate a food. I don't have any other symptoms than low energy and a sense of impending doom. Symptoms stay for 3 days then go away. Started collecting the info in my github. I'm very interested if anyone has more ideas.

icoder 3y ago
Did you purposely leave out what type of food or was that a typo? Because that would be an (the) interesting part of your experience!
- aszantu 3y ago
  I'm on carnivore diet. I seem to tolerate almost only meat, plants only in small quantities. I did okay with 1 grapefruit/day for a while but that's come to an end. I seem to be okay with fermented thyme. Pepper is no good, swollen eyes, but chilly seems to be okay. Those are never consumed in big quantities, I could test with chilly capsules though and maybe I will. Diet consists of Lamb, once a day, then some yoghurt or kefir in the evening. Some koffee and milk as well. Haven't collected everything yet, maybe you find something that helps - or can add some. Trying to get diagnosis for leaky gut, it's a drag to get an appointment. https://github.com/cutestuff/FoodDepressionConundrum https://github.com/cutestuff/FoodDepressionConundrum
coldtea 3y ago
That could be some micro-allergy to that food (or one of its ingredients)?
treprinum 3y ago
Did you try antihistamines? This could be some form of acquired allergy or auto-immune reaction.
- rocqua 3y ago

vlovich123 3y ago

How would one go about getting a test of the levels of this protein?

aestetix 3y ago

There needs to be more research into this horrible disease. There are no yet confirmed biomarkers for it, so doctors dismiss patients as crazy or "making it up." Once there is a biomarker, perhaps like this protein, we can actually start testing treatments to see what works. The scary thing is that there seems to be a vicious path, of COVID->long COVID->ME/CFS. We're not sure what makes COVID evolve into long COVID, which also means we have no idea how many people who catch COVID eventually wind up with long COVID or ME/CFS. And there is a total media blackout on the topic, seemingly because politicians don't want to admit they fucked up. Hopefully once there is a way to verifiably test for it, a lot of things will change for the better.

manmal 3y ago
Just an observational study (FWIW), but microbiome defects could play a role in development of long COVID: https://gut.bmj.com/content/71/3/544 https://gut.bmj.com/content/71/3/544
Madmallard 3y ago
they could do transport chain simulation with blood or muscle samples most likely but it would require expensive equipment so not really feasible if a million people have it perhaps organic acids testing could show something?
maxehmookau 3y ago
> doctors dismiss patients as crazy or "making it up." I don't think that's true, at least not in my experience anyway. People (myself included) are too quick to conflate "all in your head" with "making it up". Things "in your head" can and do have real, physical, life-limiting, effects. If it turns out that ME/CFS doesn't has a physical marker, then what? There may never be a way to verifiably test for it other than symptomatically. It's no less real for the people living with the effects, but there may be no pill to take, or injection to administer.
- j_maffe 3y ago
  Yes but recent studies have shown that it's neither of those, meaning that the symptoms are physiological. Not that I'm dismissing the importance of proper care of people with my psychiatric issues with fatigue or pain, it just doesn't apply to ME/CFS/LC anymore.

quenched 3y ago

I understand there is an interesting back-story to this paper that will be published in the Washington Post next week. If the findings are replicated (they look promising) we will owe a debt to the patients involved, as well as the researchers, but in particular to the 38 yo index patient with Li Fraumeni syndrome.

hotdogscout 3y ago

I got long covid in Jan 2022 but after 9 months the neurological symptoms went away. I got sick just this week and the brain fog came back. Taking probiotics and supplements (omega 3, Multivitamins) and aspirin accelerates the process of getting better for me. I use n-back exercises from Brain Age Concentration Training as measure.

philjohn 3y ago
Interesting, as aspirin is an anti-inflammatory - there's also a super small scale trial that happened in Madrid where a short course of 30mg of predisone had positive impact on those suffering from long-covid.
swores 3y ago
Im confused as to how you reached the conclusion that probiotics and those supplements speeds up the recovery, if your data points are 1) that took 9 months to recover and 2) that only happened in the last week. Is it that this week's brain fog has already gone away and the only difference you can think of is taking those things? In which case it's really nowhere near enough data points to draw conclusions. Really, even for stuff like people saying "when I get a cold, I always recover faster if <x>" is almost certainly either a placebo effect, or a random opinion that may or may not align with actual medical reality. Because not only does something like "a cold" or "a flu" or "covid" cover many variants rather than being a single identical type of infection, but even if they somehow knew that every time they had been infected by an identical form of a virus there are still so many variables such as how much of the virus initially breached their body, how much sleep they'd had in the lead up to and post- infection, what they'd been eating around the time, etc etc Which is why we use studies looking at large numbers of people to figure out what does and doesn't help recovery rather than relying on anecdotes. And in your case it seems like even less data than someone making a judgement based on potentially dozens of colds over their lifetime, it's just one or two data points? (Although since probiotics and vitamin supplements won't, in typical doses, cause any harm except to your wallet, there's certainly no harm in taking them after a sickness - and even if there isn't a link between them having a physical impact in speeding up recovery, they could still or course work wonders as placebos too!)

niffydroid 3y ago

As a side note there is the following study CFS/me which might be of interest "We aim to find genetic causes of why people become ill with myalgic encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) with our ground-breaking research. Take part from your home" https://www.decodeme.org.uk/ https://www.decodeme.org.uk/

GordonS 3y ago
I participated in this, and would encourage others to do so. It's really easy: they send you a spit kit, you do it and post it back, simple as that.
FollowingTheDao 3y ago
Sorry, but they will not find it. At best ME/CFS has a polygenic cause but unless they are also testing for nutrient deficiencies this will come to nothing. The cure can only come from personalized medicine, looking at the individual, not looking for a common cause.
- niffydroid 3y ago
  But surely this is a treasure trove of data? Sure the research is aiming to find some sort of common ground, but it still would be possible to use the raw data later on

musha68k 3y ago

Recent TWiV episode with tangents on COVID-19 / post-COVID-19 syndrome: https://www.microbe.tv/twiv/twiv-1034/ https://www.microbe.tv/twiv/twiv-1034/ https://www.science.org/doi/10.1126/scitranslmed.abq1533 https://www.science.org/doi/10.1126/scitranslmed.abq1533

deleted 3y ago

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kitanata 3y ago

[flagged]

AnimalMuppet 3y ago

There is some research currently on low doses of naloxone as a treatment for long Covid/CFS/ME. Would naloxone have anything to do with this protein, or is it an unrelated approach?

PaulKeeble 3y ago
We think it just reduces some of the brain inflammation and thus alleviates some of the symptoms. Its also a treatment sufferers become tolerant to and it stops working. Its also very hard to dose right and requires constant adjustments and its not without side effects that often make it not worthwhile and for some people it never works. It should be authorised as a treatment for ME/CFS and Long Covid in the short term alongside Ablify as sufferers should get to try these and see if they work but they are both very far from a good treatment and do nothing for the core parts of the condition.
- nradov 3y ago
  There's no process to "authorize" an existing approved prescription drug as a treatment for ME/CFS and Long COVID. Doctors can already prescribe those drugs off label if they wish (although the patient might have trouble getting insurance coverage for those claims depending on their policy). In order to make them on-label treatments then the drug company or some other party will have to conduct a large-scale clinical trial and go through the FDA regulatory process to prove that it is safe and effective. This is expensive, but drug companies do such studies all the time in order to increase revenue and extend patent protections.
  - GordonS 3y ago
    It depends on the country. In the UK for example, medications are indeed licensed to treat certain conditions. Specialist doctors are able to prescribe off-label regardless, but most are reticent to do so.
InSteady 3y ago
I could be wrong, but I believe naloxone isn't really orally bioavailable. Most of the very limited research focuses on low dose naltrexone (LDN) instead, naltrexone being another opioid receptor antagonist with paradoxical properties, namely analgesic and anti-inflammatory properties, at low dosages. There could be a link here, although it is tenuous and purely lay speculation. ER stress is discussed in the article: >Both S1 and the people with ME/CFS had biochemical signatures of ER stress in their muscles, and treating S1’s cells in a dish with a drug that blocks ER stress lowered WASF3 levels and restored mitochondrial function. On the flipside, using toxins to artificially induce ER stress in cultured cells or in mice caused a rise in WASF3 levels, Hwang says. LDN has been found to be quite effective in alleviating ER stress specifically in the epithelial barrier in IBD [0], rather than the ER stress - WASF3 levels being investigated in muscle cells in the above article. Certainly worth investigating. And, as noted in the article, the WASF3 angle is merely one potential pathway of the disorder. [0] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5845217/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5845217/ >Low dose Naltrexone induced clinical improvement in 74.5%, and remission in 25.5% of patients. Naltrexone improved wound healing and reduced ER stress induced by Tunicamycin, lipopolysaccharide or bacteria in epithelial barriers.

cpncrunch 3y ago

Small study, and its unclear if results are actually statistically sigificant https://www.s4me.info/threads/wasf3-disrupts-mitochondrial-respiration-and-may-mediate-exercise-intolerance-in-myalgic-encephalomyelitis-chronic-fatigue-syndrome-2023-hwang-et-al.34776/page-5#post-489320 https://www.s4me.info/threads/wasf3-disrupts-mitochondrial-r...

joshjhargreaves 3y ago

All I can say is that having significant gut dysbiosis is enough to have significant fatigue - think for sure, you can end up having fatigue from cell energy production issues, but it's clear to me that there are definitely different causes of CFS.

vaelin 3y ago
It's possibly the same thing. Endoplasmic Reticulum Stress, the type of stress which may cause this protein to become elevated, was induced in mice by exposing them to endotoxin, a type of toxin produced in the gut. So gut dysbiosis may trigger this very mechanism.

ugh123 3y ago

For those not aware of the extreme cases of long covid, see "Physics Girl" Dianna Cowern and her illness. https://www.youtube.com/watch?v=vydgkCCXbTA&ab_channel=PhysicsGirl https://www.youtube.com/watch?v=vydgkCCXbTA&ab_channel=Physi...

harha_ 3y ago

Last year I thought I had something like CFS but it turned out to be "just" a Vitamin D deficiency.

msie 3y ago

I hope development of a treatment doesn't take 10 years.

roody15 3y ago

Throughout my late teens and early 20’s I suffered from chronic fatigue. Tested positive for mononucleosis three times until later finding these were false positives to Epstein Barr. Later learning my body was having an autoimmune inflammatory response to viral activity causing debilitating fatigue. Took variety of treatments including steroids, anti depressants, supplements … and so on. When I was 22 I met person on the campus of mizzou who simply showed me some meditative stretches and breathing exercises. The idea was to just slow down and focus on improving your bodies own health where it’s at. This is a oversimplification but the key for me was to stop thinking this was a virus or disorder or in general things were happening to me .. in which I was a passive unfortunate recipient looking for professionals to help. Instead I decided from now on I would just try and be a healthier person in mind body and spirit where I was at that moment. The change of mindset to where it is my responsibility to improve my own well being has paid massive dividends. As a middle man I have no real health issues, no chronic fatigue or reoccuranr high white blood cell accounts indicating and over reactive immune system. My case will lot insipidity apply to all but if I could impart any wisdom would be just take things into your own hands and be an active person working on improving your own condition whatever it may be. Change the mindset of shoots this sucks and no treatments work … why is this happening to me… to what are things I can do to improve my existence. Am I a nice person. Am I healthy (weight / exercise).. do I like my job and find it is meaningful… Sorry if sounds dumb and corny but made a world of difference for me.

deleted 3y ago
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hinkley 3y ago
Complications of Epstein Barr have not been ruled out as a cause for CFS. But the problem is that nearly everyone has been exposed so it's hard to find counterexamples (or the lack of counterexamples)

barryaustin 3y ago

For anyone generally curious about the ME/CFS patient experience and state of medicine, there are a couple good articles in The Atlantic[0][1]. For those interested in latest research, Dr. Bhupesh Prusty presented[2] a very plausible hypothesis with detailed evidence[3] of virus-triggered autoimmunity causing mitochondrial dysfunction in endothelial cells (vascular system). And there's a promising treatment for Long COVID with a study[4] claiming improvement in many symptoms, and describing the targeted mechanism of disease pathology (also vascular system). Needs trials and replication, or until then doctors willing to risk off-label treatment. [0] https://web.archive.org/web/20230728074923/https://www.theatlantic.com/health/archive/2022/09/mecfs-chronic-fatigue-syndrome-doctors-long-covid/671518/ https://web.archive.org/web/20230728074923/https://www.theat... [1] https://web.archive.org/web/20230731145624/https://www.theatlantic.com/health/archive/2023/07/chronic-fatigue-long-covid-symptoms/674834/ https://web.archive.org/web/20230731145624/https://www.theat... [2] https://www.youtube.com/watch?v=sBmtnMenHgw https://www.youtube.com/watch?v=sBmtnMenHgw [3] https://www.medrxiv.org/content/10.1101/2023.06.23.23291827v1.full-text https://www.medrxiv.org/content/10.1101/2023.06.23.23291827v... [4] https://www.researchsquare.com/article/rs-2697680/v1 https://www.researchsquare.com/article/rs-2697680/v1

Aurornis 3y ago
A warning about Long COVID research: Any long-term trials that don't have a control group are virtually useless. When large Long COVID patient groups are studied without any treatment, the number of people reporting Long COVID symptoms declines over the course of the study. The takeaway is that for many (but not all!) Long COVID symptoms naturally get better over time. This is a huge problem for Long COVID treatment studies that don't include a control group because there's no way to tell if the treatment made the patients better any faster than they would have normally healed.
- barryaustin 3y ago
  Yes, that's why I said "needs trials and replication". That small clinical study is useless for insurance companies and standard medical practice today. But it is very useful to point the way toward promising areas of further research, and for any pioneering risk-takers who might be willing to try. That is, after all, how we learned that stomach ulcers are not psychosomatic (caused by "stress"), but rather by the bacterium H. Pylori. A doctor infected himself, got ulcers, and cured himself with antibiotics!

tysam_and 3y ago

I have a post-viral syndrome case of chronic fatigue. I've not been diagnosed with CFS formally, but I match many of the symptoms required, including orthostatic intolerance. It is an extremely complicated condition. I personally have had a pet theory that disturbed barrier function is involved somehow, and seeing this article is extremely confirming for me, since it mentions that as a potential factor. In fact, one study on just the metabolites of people with CFS vs healthy people found that a Vitamin E derivative -- one often a part of healthy cell barrier function -- was significantly lacking in CFS people compared to the normal population, and was a strong marker. However, this seems to have been largely brushed over in later literature, with more popular things like fatty acid processing and such being mentioned. What has worked for me: -- Ketogenic diet (avoiding lactic acid production) -- greatly dampened PEMS. -- Blood glutamate scavengers + Niacinamide + Ribose (1g): Provides NAD + a cofactor needed to transform glutamate in the blood into something else. For some reason, this really seems to help with CFS patients. Helps with resting fatigue. The cheap and accessible BGS I use are NAC, pyruvate, and (sometimes) malic/citric acid. Malic is better as it is right before oxaloacetate, a BGS, in the Krebs cycle, and it turns into Citrate. Citrate IIRC raises the levels of one of the enzymes that eliminates lactic acid. Your blood cells can only use glycogen, so there will always be some level of lactic acid production to be suppressed. -- Reduced glutamate + free glutamate intake: Lower-glutamate proteins (tuna, etc), no hydrolyzed soy protein, yeast extract, etc. -- Gotu Kola (biases the glutamate<->GABA conversion towards glutmate->GABA as I understand, a double-bonus), various anti-inflammatories (Quercetin+non-citrus C, liposomal Turmeric+curcuminoids (!! Important, piperine inhibits both Pgp and glucoronidation, which increases absolutely everything in absorption. Liposomal is better), and boswellia for LOX-5 inhibition. Looking to move to a stronger Boswellia extract (5-Loxin) as it's lighter weight. These changes, while I still have energy issues, have made it safe enough for me to be able to backpack outdoors for extended periods of time. My longest so far has been a 2 month trip (with 1-2 nights indoors). Hope this helps anyone who struggles with this and is looking to experiment. I wish I was back to 100%, but being able to be out in nature after being mostly bedbound is...well, my heart is much more full when I am. <3 :')

lilyball 3y ago

I would love to know if these results apply to fibromyalgia as well, as CFS/ME-like fatigue can be present with fibromyalgia. For example, in my case, the only reason I wasn't given a concurrent CFS/ME diagnosis with my fibro is because I couldn't point to a viral infection that triggered the fatigue.

alexfromapex 3y ago

My working theory is that viruses like COVID trigger autoimmune reactions because of ACE2 binding which causes immune cells to attack the thyroid and cause hypothyroidism leading to fatigue.